Fragile X is the leading cause of intellectual disability worldwide and this year marks the first that Fragile X Day has been recognised globally.

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An estimated 90,000 Australians are impacted by the genetic disorder, that can result in intellectual, physical and behavioural symptoms.

Jo Ryan's son Ben Gower has Fragile X Syndrome and she and her family have worked tirelessly to raise awareness since his diagnosis nearly 30 years ago.

In May of this year, Mr Gower shaved his head for charity- raising $5400 in just a month for the Fragile X Association.

For Ms Ryan, the increased community awareness of her son's condition makes her advocacy all worthwhile.

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"Raising awareness has been my biggest focus," she said.

"I won't be around forever but it's important that people know about Ben."

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